Bucksport Couple Home with Newborn with Rare Condition

Nicole and Benjamin Bustard of Bucksport are happy to have their little Mr. Personality home.

“He has a ton of personality already, and I don’t know if you can see it right now, but he frowns all the time, and I don’t know if it’s because he’s had a hard life so far.”

Baby Eli is seven weeks old . Six of those weeks have been spent in hospitals.

“His temperature was low. It was about 94%, and so, we went to the ER, just to get him checked out there,” said Benjamin.

They spent the next month at Eastern Maine Medical Center.

“They ruled out a lot of possibilities. They were really great there,” said Benjamin.

Doctors were able to determine the problem had something to do with Eli’s airways.

They went to Portland to see specialist, who diagnosed Eli with a rare condition called a laryngeal cleft, meaning there’s a hole between the larynx and esophagus. That causes food to go into his lungs.

“It was weird but we we’re really relieved, and scared, because we didn’t know how they were going to repair it, but at the same time, finally, there’s an answer for it,” said Nicole.

They wound up at Boston Children’s Hospital.

“There are two doctors in the country that kind of specialize in this situation. He’s like the leading publisher. We’re very lucky to have him so close to home,” said Benjamin.

Eli has stage three. There’s only been a few documented cases.

“In two stage because of the severity of it. So, they’ll go in and fix about halfway to three quarters and then do the rest at another time, which is very encouraging. We can just really feed him right through his belly, and know that he’s getting everything he needs and he’s going to grow strong and and happy and healthy,” said Benjamin.

“For lack of a better term, the angels that showed up, and just kind of poured into us, and really gave us the financial cushion, has been amazing,” said Benjamin.

They say receiving help felt strange at first, but they’re grateful for the tremendous support and encourage others to reach out if they find themselves in a similar situation.

“Parenting is challenging regardless of your child, and we were just very lucky to have a community that gathered around and supported us through the harder times,” said Benjamin.

As for their hopes for their baby with the big personality, “I just keep picturing this little boy on a bicycle. You know, I mean, we were questioning that for awhile, and you know he’s your little guy, and you just want to wrestle with him, and stuff like that, I just want him to just smile, and be happy,” said Benjamin.